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Et fyldig referat fra Invest in ME-konferansen London 20.04.11

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Nytt referat fra Invest In ME hentet fra ESMEs Facebookside

European Society for ME har lagt ut en rapport fra konferansen på Facebook, skrevet av en tilstedeværende. Jeg vet det er mange som leser bloggen som ikke er på Facebook derfor legger jeg det ut i sin helhet her også:

«Exactly at nine o’clock, Annette Whittemore gave the first speech. I like this woman and I pray to God she will lead the WPI for many, many years. Dr. David Bell was the following speaker. I would like to emphasize the following ideas: Initial severity marks the rest of the illness / Children with CFS don’t recover, though sometimes in their twenties they may feel or do a bit better, but they will remain ill for all their lives / “I’m doing well”: people with CFS have a false perception of health and tend to say they are doing well in comparison with when they were terribly ill, but that does not mean that they are doing well in comparison with healthy people / Some people talk of recovery when they should talk of adaptation.

Dr. Andreas Kogelnik, a young MD, one of those guys who believes he has an answer to everything and has the world in his hands. He told us that some years ago he had been working with Dr. Montoya but is now the Founding Director of the Open Medicine Institute. He believes that with translational informatics and high technology, he will advance in the detection and implementation of clinical trials for CFS patients across a network of sites. He has his faith in the OMI Network. I send him my best wishes.

Then it was Dr. John Chia’s turn. (Richard and Pia, please bring the Chia’s back every year). What he said is so interesting and has so much sense that it’s always a pleasure to hear him. His son, Andrew Chia, has CFS, but he is doing fairly well. He is sure we have an enterovirus infection in the gut, he talked about treatments, basically immune boosters (herbal immune boosters or interferon) and warns us about steroid intake because he said it boosts the infection. He said Oxymatrine works in 50% of his patients but has side effects and about “equilibranthealth”http://www.equilibranthealth.com/index.php he said that if in six months it doesn’t work, you had better forget about it.

Professor Geoffrey Burnstock’s lecture, which was very technical, was about autonomic neuroscience. He has never worked on CFS patients but said that all that he was learning about this illness agreed with what he had discovered on P2 purigenic receptors. Dr. James Baraniuk spoke next. He is conducting a CFS and a GWI research study, doing lumbar punctures where they measure the spinal fluid pressure during the procedure and search for specific proteins that may help understand these two similar conditions. As a treatment, he is trying Carnosine as an antioxidant that could relieve symptoms.

I was late to the next lecture, and I think it was Professor Simon Carding who was talking about the immune response in gut functions. As Dr. Chia does, he said he was studying intestinal flora, Simbionts, Bacteroides and Firmicutes. As treatments he talked about sour milk, probiotics and bifidus. Dr. Chia and his son took notes during this lecture.

Dr. Oystein Fluge and Professor Olav Mella were next with their hypothesis that at least a subset of CFS patients have an activated immune system as an autoimmune illness, and these people could benefit from a B-cell depletion therapy using Rituximab.

Then, it was Dr. Kenny de Meirleir’s lecture. We were all expecting him to talk about his novel XMRV gut test. Surprisingly, he didn’t say a word about this and his well built lecture was based on different markers CFS patients have: low uric acid, increased copper/ceruloplasmin, elevated Gamma GT, and Alcaline Phospatases can be very low, etc. Then he talked about therapies that work for some as antibiotherapy, Probiotics, Prebiotics, and Enzymes, etc and warn us about oral NSAID. It was very interesting, indeed.

At last it was the turn of Dr. Judy Mikovits. We were all surprised by the strength and passion with which Dr. Mikovits presented her lecture. It was about Clinical implications of XMRV and MLV-Related (MRV) Human Gamma Retrovirus infection. We could see in her slides that her lab has identified several footprints of HGRV infection. She said that XMRV infection may accelerate the development of B cell malignancies, and since viral load in peripheral blood is low, she believes that B cells in tissue such as spleen and lymph nodes could be an in vivo reservoir for XMRV. She also told us that they have identified an inflammatory cytokine and chemokine signature in positive XMRV CFS patients. Then she told us that a subset of these patients have responded favourably to treatment with the immune modulator GcMAF, others to antiretroviral therapy, others to Ampligen and others to Stem Cells.  I understood that she said that Hormones and Inflammatory cells increases XMRV, that oxidative stress, glutathione depletion and DNA hypomethylation all increase viral replication, that we should never take steroids and that if women want to breastfeed their children, they must do it only up to the sixth week. Watching her while she was talking, all of a sudden, I felt how alone she must feel with everybody trying to prove she is wrong and immediately after rush to patent their proper test, or give a new name to her retrovirus. Money and other researcher’s ego can ruin Dr. Mikovit’s work, and patients could have to wait twenty long years more before science admits that Eleine de Freitas and Judy Mikovits were right. For some seconds I had to struggle not to let my tears fall. In one of the breaks I managed to get near her and I heard her say “Please, do not be discouraged about the negative papers. The positive papers will eventually come out.”

The big surprise of this Conference was the three minute lecture of Dr. Wilfried Bieger. He said he had presented a negative paper about XMRV, that Dr. Judy Mikovits had offered to show him how to find XMRV, that following her advice they had found XMRV in German patients and that now they were working on a most efficient new test. And as this positive data had not been published, he would say no more. Time will give us the clue if he is a serious researcher or another charlatan.

The big elephant in the room: Dr. Daniel Peterson, attended the conference, though he was not invited to give a lecture. He did not sit in the first row in the Conference room, and I never saw him talking to Annette Whittemore, Dr. Judy Mikovits nor with Dr. Kenny de Meirleir, with whom he had been a very close friend a year ago. He was only interested in talking to Dr. Andreas Kogelnik. Some people tried to talk to him, but he was not in a good mood. One of the patients told me Peterson was behind a new XMRV negative paper that is expected to come out in two or three weeks. Another one told me that this paper would be signed my Dr. Levy. If all this is true, friends, we must take it easy. Better think it could be the last negative paper. Other people were saying that before this year comes to an end, everything could change dramatically and some positive papers could pop up and XMRV validation finally accepted. »

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Stemningsrapport fra Invest In ME konferansen i London 20 mai 2011

Jeg har fått tilsendt en flott stemningsrapport fra Invest In ME konferansen fra Måne, en av mine trofaste lesere her på bloggen. Tusen takk :-)!!

Hun skriver følgende:

«Inntrykk fra Invest in ME-konferansen i London

Dette er IKKE et referat, men et forsøk på å dele noen inntrykk fra en flott konferanse.

Jeg føler meg ikke kompetent til å referere konkrete opplysninger pga mangel på medisinsk kompetanse og manglende engelskunnskaper  i  denne sammenheng.  Det endelige referatet må dere vente med til videoen fra konferansen kommer. Denne må vente pga forskningsresultater som ikke er tilgjenglige for offentligheten enda. (f.eks Fluge\Mella)

Det var et bredt sammensatt panel, og alle hadde litt forskjellige vinklinger til denne vanskelige sykdommens evnt. årsaker og opphav. Her vil jeg anmode dere om å se  programmet for konferansen for å få nærmere opplysninger om disse.

Jeg deltok også på pre-konferansen  torsdag kveld. Denne var viet ME og politikk, samt middag etterpå.

Under pre-konferansen presenterte Dr.Ian Gibson historien om hvordan IiME jobber for å etablere et stort senter for ME i England og hvordan de etablerer samarbeid med leger og forskere samt politikere. Her planlegges både opplæring av helsepersonenell, forskning\utredning og behandling slik jeg forsto det. Dette arbeidet vil få stor betydning for engelske ME-pasienter som helt tydelig har store utfordringer med å bli trodd og tatt på alvor. Denne historien kjenner vi  godt!

Vi fikk også en historisk gjennomgang (fra USA) v. Hillary Johnson , fra epidemiske utbrudd på 50-tallet, 80-90tallet og historien fram til i dag. Vi kjenner denne historien fra blogger og forum ; Om neglisjering av epidemiske utbrudd, om forskning som ble stoppet og forskningsmidler som ble misbrukt. Oppfordringen fra Hillary Johnson var klar:

-Lær av det som har skjedd i Nord-Afrika og midt østen:

-Bruk  sosiale medier for alt det er verdt! Vi må aldri gi oss!

Etterpå var det sosialt samvær med middag. Det var særdeles hyggelig å treffe andre norske delegater\deltakere fra Norges ME-forening,  og disse mer erfarne delegatene delte villig sin kompetanse på feltet. –Dette er folk som kan sine saker ! Tusen takk skal dere ha 🙂

Fredag var jeg svært spent på hva selve konferansen ville by på! Det er ikke lett å formidle dette stoffet, men:  Jeg synes jeg fikk bekreftet det vi vet fra før på en måte som er krystallklar:

ME ER EN FYSISK SYKDOM.PUNKTUM!

Selv om foredragsholderne hadde forskjellige innfallsvinkler på sin forskning og behandling, sitter jeg igjen med en klar oppfatning av at ALL forskning som ble presentert denne dagen  peker i samme retning:

Dette er en nevrologisk-immunologisk-infeksjonslidelse.

-Selvsagt gjenstår masse forskning, hva kom først, høna eller egget? Men debatten om dette som en psykosomatisk lidelse bør skrinlegges en gang for alle nå!

Og som Prof. Meirleirs pasient,  gleder det meg stort å se at hans kliniske tilnærming til sykdommen tar hensyn til ALL denne forskningen. Jeg opplever at han ligger i forkant med sine behandlingsmetoder, og at han har den individuelle tilnærmingen som kreves :-). Det var også gledelig å se at Mikovits og Meirleir var svært på bølgelengde. Dette kom tydelig fram under spørsmålsrunden etterpå der alle foredragsholderne satt i panelet. De konfererte på en gemyttelig måte om hvem av dem som skulle svare, og dette skjedde flere ganger, det  tyder på ganske stor enighet dem i mellom 🙂

Fluge og Mella hadde en spennede presentasjon. Siden studien ikke er frigitt, ble vi som deltakere bedt om ikke å røpe dette stoffet.

Det samme gjelder forskning på XMRV\EBV i Tyskland.

Men jeg synes jeg kan si så mye som at jeg  gjentar: ME er en fysisk sykdom!

Og vi må bruke disse etterhvert frigitte studiene for alt det er verdt for å presse norske helsmyndigheter til å få fart på biomedisinsk behandling!

Jeg syntes også det var svært spennede å høre på Dr Andreas Koglnik. Han presentere sitt Open Medicine Institute. Der vektlegger de å bruke ny teknologi på alle måter: Lab.tester, forskning, direkte kommunikasjon melom instituttet, leger\forskere og pasienter. PÅ nett hele tiden!

Han sa: Glem diganoser! Vi vil kunne teste nøyaktig hva som er feil gjennom ny teknologi  uten å vite diagnose eller diagnosekriterier! Jeg ble fasinert av den helhetlige måten de tenker teknologi på, og jeg er spent på hva dette vil bety i framtiden 🙂

Enda en gang vil jeg oppfordre dere (som orker ) til å lese programmet på IiMEs nettsider. Der får dere info om de forskjellige forskerne og hva de står for. -Dette er folk som har forskningsresultater som ikke kan tilbakevises!

Og sammenhengen mellom XMRV\MLV (HGRVs)og ME, fibromyalgi, autisme, demens, parkingson og MS ble presentert som svært sannsynlig atter en gang.. Her har vi defintivt ikke hørt siste ord!

Kvelden ble tilbrakt sammen med den norske  ”delegasjonen” på italiensk resturant. Det var veldig, veldig hyggelig avslutning på en fantastisk fin konferanse ! 🙂

Tusen takk til IiME v. Richard og Pia, tusen takk til alle gode medvandrere for sosialt fellesskap og tusen takk til alle foredragsholderne for lærerike presentasjoner!

Tilføy eller korriger gjerne min korte oppsummering dersom der vil 🙂

SAMMEN ER VI STERKE!»

Fra Annette Whittemore om Invest In ME 2011

Hentet fra Dr. Speedy:

«A message from Annette Whittemore:
Hello Everyone,

The Invest in ME Conference just ended a few hours ago. This conference brought new and exciting ressearch to ME that is soon to be published. Dr. David Bell discussed how the patients that he saw as children are now adults around 40 years old. Several have cancer, while others are still severly ill, but the majority are coping and say they are well but are actually still living with CFS. Dr. Demeirlier continues his important XMRV research, in Belgium and around the EU, finding many of the sickest patients positive for the retrovirus. Dr. Mikovits showed more «footprints» of XMRV infection from the patient’s immune system data and described how XMRV seems to act more like HTLV than HIV. Dr. Bieger, a delightful iimunologist from Germany, is doing exciting work with XMRV and EBV. The rest will have to wait until the conference DVD is completed.»

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Bestill DVDen fra konferansen HER 

CFS Patient Advocat har skrevet om ME-tilstandene i Amerika

På oppfordring fra Invest In ME konferansen som har vært avholdt i London i dag har CFS Patent Advocat beskrevet dagens situasjonen for ME i Amerika:

Hentet fra CFS Patient Advocat:

«The biggest problem in ME/CFS is the public and «behind the scenes» working of what I would call the «dark force». These are the many people with «black haloes» who want to submerge these ME/CFS patients for the next 25 years – as they have done for the last 25 years. Who are these people? They are many, and it would take up too much space to name them. Some are now even dead, to be replaced by new heartless people. Since October 2009 a fresh and resourceful concerted effort is being made to stop all meaningful research into the cause or treatment of this illness. This is a continuing phenomenon and again one must ask why? What is behind this hostility and indifference to a broad and deeply suffering patient population? There are many people who seem to enjoy the negative positions that they can take relative to ME/CFS – and very few who will stick out their necks, and actually try to do something with this illness. Certainly the US government has made it clear that they are not going to directly grapple with this illness. The aggravated, grinding, mean-spirited, indifferent attacks on this illness are ongoing. Does this happen in other diseases? The answer is no, this situation is particular with ME/CFS. Why?»

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Bestill DVD fra «Invest in ME 2011» konferansen på forhånd

Hentet fra Invest in ME:

The 6th Invest in ME

INTERNATIONAL ME/CFS CONFERENCE 2011
The Way Forward for ME – A Case for Clinical Trials

CONFERENCE DVD ORDER 

Earlybird Offer for May 2011

The full presentations from the 2011 conference plus plenary session and

Science, Politics … and ME 
A Transatlantic View of the Influence and Effects of Politics on Research, Media and Healthcare

with Dr Ian Gibson and Hillary Johnson

Annette WhittemoreProfessor Geoffrey Burnstock

Professor Kenny De MeirleirDr. David Bell

Dr. Andreas Kogelnik

Dr. John ChiaProfessor Olaf Mella

Dr. Oystein FlugeDr. Judy Mikovits

Dr. James Baraniuk

Dr. Wilfried Bieger

Professor Malcolm Hooper
(conference chair)

Location Cost
UK £11
EUROPE £12
OUTSIDE EUROPE £14

(Price inclusive of postage and packaging and isper DVD set)

PAL (European) or NTSC (USA/Canada) regions available 
Region code 0

Note: Prices above are the Earlybird offer for May 2011 and will increase after 31st May 2011

Klikk HER for å bestille DVD

Organisasjonen «Invest in ME» om MRC Pace Trial studiet publisert i dag

Hentet fra Invest in ME:

«How ironic it is that the Department of Health and the UK National Blood Services permanently prohibit people with ME/CFS from donating blood – their reasoning being that ME/CFS is a relapsing condition and this was to protect the health of patients. Yet now the message to the healthcare professionals from the PACE trials is that graded excercise and cognitive behaviour therapy are helpful – thus forcing vulnerable and physically ill people to risk further damage to their health.

By any measure the PACE trials are flawed and are not the result of proper research. Using diagnostic criteria which do not define patients with ME/CFS and which exclude people with neurological disorders means that patients participating in these trials were of a heterogeneous variety – thus making the results completely irrelevant. This nullifies all of this study.

The PACE trials are designed, created and performed by those who view ME/CFS as a consequence of wrong illness beliefs or deconditioning.

The PACE trials are bogus science and have no relevance in the treatment of people suffering from myalgic encephalomyelitis.»

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Referat fra Invest In ME konferansen 24 mai

Hentet fra European Society for ME:

«Done by Charles Shepherd from the ME association; This is a personal summary of the 2010 Invest in ME conference that has been prepared for ME Association members.  A further summary, with additional background information, will appear in the July issue of ME Essential magazine.»

Les hele oppsummeringen/referatet HER

Internasjonal ME-konferanse London 24 mai

24 mai er det tid for Invest in MEs årlige internasjonale ME-konferanse i London. I år er det følgende program. Se link HER:

«07.45 Registration

08.55 Invest in ME Welcome to the Conference

09:05 Professor Leonard Jason PhD How Case Definitions Can Stigmatize: Implications for
Epidemiology, Etiology, and Pathophysiology

09:50 Professor Nora Chapman PhD Persistent Enteroviral Infections

10:35 Dr John Chia MD Enteroviruses in ME/CFS, Diagnosis and Treatment

11.15 Break

11:35 Dr Paul Cheney MD, PhD Diastolic Dysfunction in ME/CFS: A Cardiac
Manifestation of Cellular Defects in ME/CFS

12:20 Dr. Jonathan Kerr MD, PhD Study of SNPs to determine subtype status in CFS patients

12.50 Lunch

13:40 Dr Nancy Klimas MD Immunological Biomarkers in ME/CFS

14:25 Professor Brigitte Huber PhD Presence of Retrovirus as a Biomarker for ME/CFS

15.10 Coffee/tea Break

15:30 Mrs Annette Whittemore Future Pathways of Research into ME

15:45 Dr. Judy Mikovits PhD Implications of XMRV Research for ME/CFS

16:40 Professor Malcolm Hooper and Presenters Plenary Session

17.30 Adjourn»

Det vil bli mulighet til å bestille DVD fra konferansen og jeg vil legge ut link til dette når den er tilgjenglig.